Meniere's– "As The World Spins"

Okay, it’s time to discuss the huge elephant in the room.  Well, in my case, it is a dragon named Galar.  January 6, 2011, I posted A Good Day. This was a blog post giving you (anyone who does not have Meniere’s) a way to understand what I go through on a good day in this battle I fight.  I once again, urge you to read this post and have a better understanding of how things are for me on those good days.

Now, to discuss the not-so-good and the bad days I have.

Since adding the new trigger of weather in 2009, I have many not-so-good days.  It is just a factor living in East Tennessee.   I know, it could be worse, I could live in the UK.  Having many friends over there, I know they have lots of rain. 

If I wake up with what I call “waterbed effect”, it is a not-so-good day.  What this means is I wake up feeling like I am on a waterbed.  Not that the bed is wet (that is a post for another blog), but the slight motion of being on a waterbed when I don’t have one.  With this effect, I stagger out of bed much more off balanced than I usually am.  I will only drive feeling this way when I absolutely have to and if I do have to go anywhere, I have to be able to remain in the car or seated as much as possible.  During this time, I am much more susceptible to having drop attacks and this is not a desirable possibility. 

In the last couple years since I have really been more diligent in tracking these symptoms via an app on my iPod called My Pain Diary: Chronic Pain Management, I have found that I have these not-so-good days more in the days leading up to a full bout.

With the rain, I also have physical pain in my ears.  The pain isn’t intense, but more of a dull, burning ache.  What makes it really bad is that it is in both ears simultaneously and continuously.  This, after a few hours, causes a headache to set in.  When it gets to where I am ready to scream and cut my ears off, I take some Tylenol and grab the heating pad.  I bought me a microwavable heating pad that is aromatherapy as well and meant to fit around the neck.  This allows me to lay down with it and apply to both ears at the same time.

From not-so-good we travel deeper to the bad days.  If I wake up with what I call “lake effect”, I know I will be vertigo by the end of the day.  Lake effect is when I wake up feeling like I am on a rubber floatation device out in the middle of the lake.  Some people, when I say I will be vertigo by the end of the day usually snap back that I need to be more positive.  This is NOT me being negative.  It is me having lived with this dragon since November 2004.

Unless I have an obligation that I have to tend to, I usually get my cane, take my medication and go back to bed.   I do not drive or go out of the apartment at all when I am like this, unless someone is escorting me to the doctor (rare).  When I am in a bout, I am vertigo for two days.  During this time, I sleep.  My doctor has me on a psychotropic drug to help with the vertigo and I take it with a shot-glass of Pedialyte. 

The Pedialyte helps with the nausea.  I have learned to suppress the vomiting as I am the only one who would clean it up and I am in no condition to clean up vomit when I am vertigo.  Another trick I have picked up during this time is to get through my apartment without opening my eyes.  Most will tell you to open your eyes when you are vertigo.  For me, if I open my eyes, I will vomit.  I keep them closed and move about at an extremely slow pace.  During this time all I consume is the medication and Pedialyte.  I go from my bed, to the kitchen to the bathroom and back to bed all without opening my eyes.  This is my life for two days.

If you have ever had vertigo, imagine having it for two days while taking a psychotropic drug to help you with it.  (Side note – I don’t know how this drug is supposed to help the vertigo, all I do know is it knocks me out so I can endure the two days) 

Following these two grueling days I am very vulnerable for several more days.  First, it takes at least 12 hours of laying on the couch to get rid of the heavy fog which is a side effect of the drug and a residual effect of the vertigo.  Also, I am even more susceptible physically to drop attacks as I am physically worn out.  With the emotional toll it takes on me I am extremely vulnerable as well in that area.  This doesn’t mean you need to “walk on eggshells” around me, it just means you need to know that I am on an emotional roller coaster for several days.

  April of last year, I had three bouts back-to-back in one week.  This left me completely beaten up.  As a result of this, I contemplated ending the reign of Galar by destroying his prey, me.  I spent a week in the psych-ward at the hospital as a result of this.  It took this for my psychologist to finally believe me when I told him I was not depressed.  I was never diagnosed with depression.  I was diagnosed with Meniere’s w/psychosis.  There are depressed thoughts and idealizations, but not depression.

As an isolationist, I try to keep my contact with people to a minimum during the time immediately following a bout.  I know I am prone to taking things the wrong way and don’t want to make any comments that could cause ill feelings for the other person.  It is during this time that little things really mean the most to me (they always mean a lot, though).   An e-mail, an IM or a text that might simply say “hello” or “I’m thinking about you” go a long way in helping me get through this ugly period after a bout. 

To conclude, if I disappear for a while or seem even quieter than usual, it is nothing to do with you (well, probably not you), but instead, it is me trying to get back to a normal parameter following another bout with this hideous dragon.  Kind of like how you need to take time to get your family and household back in order following a tiresome visit by kinfolk you are kind of glad you don’t see very often. 

For 36 years, I have taken care of others.  At the age of nine I was cooling, cleaning and doing laundry for a family of five.  I remember Grandmaw standing me on a milk crate to teach me how to cook and wash dishes.   She even stood me up there to watch how she used her old wringer-washer.  Even though most tasks were heaped on my by my mother and step-father, it wasn’t like work when Grandmaw was by my side.  I remember the day she lowered her ironing board to teach me how to iron.  I would dream, even at the tender age of nine, of one day having my own family.  I wanted lots of children, at least enough to field my own softball team.  I didn’t just dream of babies in my arms, but also of being pregnant and giving birth.

The beginning of September 2008, I set an appointment with my neuro-otologist to have grommets inserted into both of my ears for the purpose of using the Minette Device.  The device would cost me $3500 out of pocket.  At the time this wasn’t a real major issue as I had some money in the bank and could cover it.  However, two weeks after setting the appointment, I was told that ten of the twelve employees at work (including me) would be losing their jobs as of October 31, 2008.  I was devastated and and contemplated not having the procedure.  Friends I discussed this with urged me to go forward with it and if I ran into financial difficulty due to all of it, they would be there for me.

I have always been taught that if you treat others with respect and in a dignified manner then it will be returned to you.  In other words, “You reap what you sow”.I have always done my best to treat others respectfully.  Even those who have done me ill I treat at least cordially.  After all we are all human beings and must get on together to survive on this planet.

Friday, I went for my three month check-up with my Otologist.  He came in with his nurse and nurse practitioner and asked how I was doing.  After a bit of banter I told him that I am still looking for a one-way ticket to Iraq.  a little more banter and he realized I wasn’t joking when I asked him to schedule my autopsy I have been requesting.  He preformed the exam and then I stood there and proceeded to throw a bit of a tantrum.

I know what you are thinking, but put away your visions of a two-year-old pitching a fit.  I don’t scream, yell or stamp my feet (I’d fall down if I tried).  In fact, the worst I have done in recent history was call the workers at Hardee’s a bunch of plebeians.  I went on to say, through a veil of tears, that I am angry, bitter and just plain unhappy.  The trio only watched, listened and tried to answer my questions.  My doctor felt this long over due as well as educational for his green nurse practitioner.

This past weekend I updated my computerized Medial Alert Card (ICE).  While I did this I was prompted to add my Living Will and pulled it up as well as a form to complete my Last Will and Testament.  I went back through the pages of my life as I completed these forms.  I remembered the promises of others along with the promises I made to myself.  It seems all those promises were empty.  I would like to think that those who made those promises to me made them in good conscience.  However, from here, looking back they are empty and without the prospect of ever being filled.

I had dreams for my life.  I wanted to be a wife, mother and ultimately a grandmother.  It was my deepest desire to pass on to my children and grandchildren all I learned from my grandparents.  But in one god-forsaken diagnosis all my dreams were shattered and fell to the ground around my feet.  There is no shoulder for me to cry on.  No arm for me to hold to steady my balance.  I am angry that there is a disease that has no known cause, no known cure and not very much research being done to rectify this.  this leaves me unhappy and alone.  The loneliness has bred bitterness.  If only the promises had not been empty perhaps some dreams would not have shattered.

I was looking at the posts on Facebook this morning and one of my contacts posted that she would accomplish all on her To Do list today, unless someone threw her a curve ball.  I replied that my life is nothing but curve balls and change ups.   Those who know me, know my love for baseball.  Those who have known me for any length of time know that I used to play center-left field on a softball team.  This post this morning really struck me.  Since I have been one of the “lucky” ones to have Meniere’s Disease, I have always equated it with roller coasters (I really hate roller coasters).  Today I thought for a moment and this was quite a chore since I woke up with my head and ears still driving me crazy.

Since November 2004, I have been on a wild ride.  I was invaded by a deceitful and utterly spiteful dragon.  Last week I was on the phone with the attorney’s office as my advocate helped me fill out the forms for me to get SSDI.  A lot of the questions related to how my life has changed since the invasion.  As I tried to focus (hard to do since I hadn’t eaten and my ears were going nuts) and answer the questions the best I could, I knew my life has changed, but saying it to someone else to make it official for the records just made it even more real.  Chronic illnesses have a way of changing everything about your life and make things even more difficult.  From walking to brushing my teeth, everything has changed.  I used to be able to walk, chew gum, juggle and carry a conversation at the same time.  I can no longer chew gum and have to stop walking to really carry a conversation.  Juggling, well I struggle just juggling day-to-day living.

Early November 2004, I was beaned in the head by a fastball called Galar Meniere’s.  Now everyday I dodge wild balls while trying to get even a base hit off of the curve balls and change ups that are thrown at me by this dragon.  I still look at it as a roller coaster ride, but the day in and day out of this is kind of like a baseball game.  So far he is winning, but I will play the game through and perhaps one day there will be a home run for all of us when they announce that they can finally answer all the questions that have been around since Prosper Meniere first began researching this disease in the mid 1800′s after it had been plaguing people since at least the 13th century.

A year ago I had grommets inserted into my eardrums for the purpose of being able to use a Miniette device.  However, I found it was the grommets and not the Miniette that put me into the “well controlled” category.  Before this, my known triggers were stress and being a girl.  the grommets were supposed to last about nine months.  This should have taken me to mid July.  However, as my neuro-otologist pointed out, I am not normal and have trouble following standards.

The third week of June, just one week before my scheduled appointment with my doctor, I decided to relax in bed for a while before getting up to enjoy the Shabbat.  I rolled over on my left side and tucked the pillow up under my neck.  At this point I felt a ‘crunch, crackle and pop’ in my left ear.  I lay perfectly still for a bit, afraid to move, not knowing what was happening.  When I finally sat up my world was spinning.  I had not felt this way since mid October.  I made my way to the couch and pretty much remained there until Monday when I could call the doctor.

Anyone who has Meniere’s or is close to someone with Meniere’s, knows how unpredictable this monster is.  by the time I got in for my Friday appointment, we had determined that I now have a third trigger ~ WEATHER.  Now I fully understand those who refer to themselves as “walking barometers”.  We got new grommets inserted and this time they should last two years.

While I didn’t have issues with the original triggers after the grommets were inserted, I still have minor issues with the weather changes.  It seems that when the weather changes now I get a dull ache deep in my ears and experience some fluttering.  In the beginning of September I was lucky enough to get H1N1.  This proved to have a bad effect on my ears.  I had lots of aching and it seemed my hearing worsened.  When the illness cleared I noticed that I now have constant tinnitus in both my ears instead of just the left ear.  My doctor sternly advised that I not get either versions of the flu again for the remainder of the season. (As if…)

Earlier this week I was getting over what I initially thought was a second round of the flu, but  thankfully, turned out to be Acute Bronchitis instead.  My left ear began doing weird things so I put in a call to my otos nurse.  When she returned my call, we talked.  She reminded me about the weather and advised I take it easy and keep an eye on things and call back if they don’t improve or get worse.  you know, the usual blah, blah, blah.

Everyday we have ups and downs.  Right now it appears that I am on more of a Merry-Go-Round.  For four years I felt as if I was on a very wild roller-coaster.  I HATE roller-coasters, so I am glad I am no longer on that part of this ride.  I will accept being on a Merry-Go-Round with Meniere’s although I wish I could be on a real one instead.  I will continue to research (for now with a clearer head) and write my book while educating anyone and everyone I can about this dragon that invaded my life five years ago.  one day, he will be totally defeated.  Until then, my sword stands ready to fight whenever he comes to prey.

One thing well known in the world of Meniere’s is how long it takes to figure things out. When I first presented in November 2004, I thought it was an inner ear infection. My second bout was February 2005 and I got the doctors involved. From there it took seven months to reach a diagnosis. Following the diagnosis it took several months longer to determine my triggers; stress and being a girl. Just this past June I added weather as a third trigger.

Diagnosis and triggers are only a part of the equation. I believe the longest process is determining treatment. While trying to determine what will help relieve your symptoms (if anything will) you work on treating the symptoms and the triggers. Since each person is different regarding their symptoms and triggers, so it goes that long-term relief is also different. Meaning, what works for one may not work for the next.

It took about four years from the time I first presented for me to find the one thing that helped me to return to my life nearly as if it were before Meniere’s found me. After many attempts at treatments, October 2008, grommets were implanted in my eardrums and I felt better than I have in longer than I can remember. I am moving in the right direction now and I hope that all those with Meniere’s can do the same.